Redefining happiness, one day at a time

For a long time, I hesitated to share our story. Not only because it’s complicated, and brings back memories and difficult times, but above all because I didn’t want to leave people with the impression of an unhappy or miserable caregiver. It’s true that our journey is punctuated with challenges, but it’s also filled with small pleasures, bright moments that give meaning to it all. It’s these flashes of life that I want to talk to you about.

Seven years ago, Yves’ life and mine were turned upside down. At the age of 63, my husband was diagnosed with early-onset Alzheimer’s disease. Looking back, I realize that the signs had been there for a long time, but I hadn’t recognized them. I remember that Christmas when Yves, sitting on the floor with our grandchildren, couldn’t place the pieces of a simple puzzle together. He found it increasingly difficult to make decisions, always asking me to choose for him when we dined at restaurants. Yves had studied finance, and excelled at quick mental arithmetic; a simple calculation became complicated for him. I put these little lapses down to stress, fatigue, a busy schedule and the fast pace of life. I had no idea. A few months later, an accidental fall aggravated his recent diagnosis of early-onset Alzheimer’s disease. Overnight, our daily routine was transformed. Yves was no longer coming home. This reality is still difficult to accept today. I was stunned, lost. How was I going to manage all this? How could I accompany Yves without losing my own sanity?

At first, I didn’t know what to say or do. I was anxious about every visit. But over time, I learned. I’ve learned to communicate differently, I’m learning to listen to silence. Words are less important now, we hold hands, and share our emotions. Sometimes Yves surprises me with an unexpected phrase. When I ask him if he likes his ice cream, he replies, “It’s good with you.” These little phrases are treasures that take my breath away.

Music became our secret language. Yves was an audiophile, he always loved to dance, and even if our steps are less sure today, our hearts still beat to the same rhythm when we dance together. I see him get up from his chair, assume his position, and there we dance. Glued together. It’s in those moments that I feel we’re still us, despite everything.

Every day is a challenge, but also an opportunity to experience a little happiness. Visits to the CHSLD where Yves is now living have become precious occasions. Sometimes we simply listen to music together, or I read him a book. We also reminisce—we used to be foodies, sharing a story while savouring a snack I bring him.

I’ve had to learn to take care of myself too. I’m learning to listen to my body and set limits before I burn out.

At first, it was hard. I felt guilty. But then I realized it was vital. I go to the gym, I go out with friends, I read. I also spend time with my grandchildren; their energy does me good. Even when Yves isn’t around, I feel a kind of emptiness around me. I lwonder how to cope with it. It’s amazing how closely he and I are united.

My new reality has changed me profoundly. I’ve discovered resources within myself that I never knew existed: infinite patience, the creativity to find solutions, the strength to face each day. I’ve learned to juggle medical appointments, daily care and managing our lives. It’s as if I’ve become a more resilient version of myself. As Albert Camus wrote: “In the midst of winter, I found there was, within me, an invincible summer.” This phrase has become my mantra. I read it every day, to remind myself that even in the darkest periods of our journey dealing with Alzheimer’s, there is always a light within us, a strength to carry on.

Being a caregiver means learning to live in the present. Yesterday is already forgotten, tomorrow is too far away. We live in the here and now, and that’s perhaps the greatest gift this ordeal has given us. We are experiencing things we would probably never have experienced or said before the illness.

Of course, there are difficult days, that’s for sure. Days when I can hardly breathe because of everything. But there are also these moments of grace, these seconds when Yves looks at me and says something touching. I write down these little phrases, these unexpected words in a diary. It’s a way of treasuring them, of not forgetting them. I recommend that all caregivers do the same. These notes become treasures over time. And when I reread them, I smile and it helps me to accept our situation, it soothes me.

The Alzheimer Society and Appui pour les proches aidants have been my lifelines. Thanks to them, I’ve been able to build up a veritable “toolbox” for coping with everyday challenges. I’ve also learned to allow myself periods of respite.

Our lives sometimes resemble an unfinished melody. Yves and I used to be passionate about jazz music. Today, the melody has changed, but the music goes on. When we share a moment together, practising the art of singing without words, even in silence, I feel that our melody persists, beyond words and fading memories. It’s a new composition, unexpected, but one that carries all our history with it.

Some might think it’s a diminished life. But every day with Yves teaches me something new about love, about life. He makes me realize how important it is to take care of myself, that life is precious here and now, and to realize and be aware of all the love that surrounds me.

I have fun singing “Happy Birthday” to him on any given day, because it’s a happy song, and he smiles at me. His eyes light up when I enter the room—these little gestures are worth all the words in the world. Our love expresses itself differently now, but it’s no less profound. It’s a love that transcends illness, that finds its strength in the little gestures of everyday life.